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Horror Story
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1/29/13 - Update/Edit:
As several have inquired about the timeline and were confused when i said her surgery was in May but she's been on a feeding tube for two years. The surgery was May of 2010. I was specifying the month only as a point of reference for the point at which the issue became critical (July 2010) and how long she was in the hospital that first time (into October 2010). She was also hospitalized for a few months in January 2011 when the stomache leak/infection spread through the diaphragm and into her lungs, and again the following spring and summer of 2011 for the same issues. Sorry for the confusion.
Also - I agree that the bulk of the issues centered around follow up care - which is why I was so specific about where and by whom she was being treated. But I quickly learned that such leaks and subsequent fistulas are NOT uncommon with this type of surgery - I never said they were the majority. Additionally Physicians who are now caring for her have previously cared for individuals who suffered similar, though not quite as critical, issues after having this type of surgery. So that is legitimate.
Good point on the Hipaa item - but I'm not sure that applies to family or friends sharing information they are aware of. I have no professional or legal obligation to her or her care and am not a POA or medical care provider.
Thanks to all who have read and responded - I'm still reading through them all.
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Original post:
I have not had gastric sleeve, but my sister has and this is her horror story. In the month after her May surgery, by Dr. Chua of Aurora Sinai in Milwaukee, my sister (Jane) came down with flu like symptoms. Although she contacted her primary physician, who was aware of the recent surgery, and I believe she had an office visit with Dr. Chua, nobody showed any concern about infection. This is despite the fact that EVERYBODY knows that infection mimics flu like symptoms and it was nowhere near flu season. Nobody ever did any scans post surgery to determine of there was any issue with the healing of the internal surgery area - even though I have since learned that other patients had experienced similar issues to what my sister was about to go through.
It turned out (after three ER visits in three days, despite the fact that I said I was worried about infection from the very first visit) that a staple hadn't held and that food/fluid had been leaking into her abdomen from the stomach causing a MASSIVE infection. By the time Aurora Lakeland in Elkhorn paid any attention to this she was almost dead. She barely made it through and it was literally touch and go for WEEKS!! AND that hospital wouldn't even treat her because they don't do bariatric surgeries - she had to be airlifted to Milwaukee.
What followed were numerous surgeries, months in ICU and then regular hospital (from July 4th weekend into October), an induced coma with her hands strapped to the bed so she wouldn't inadvertantly pull out tubes and wires, being intubated for breathing assistance, additional infections, memory loss of that entire time, and leaving on a feeding tube. She has been on that feeding tube for over two years now.
Oh she's thin alright. woohoo. But she gets her food from a bag hanging on an iv rack and has to grind her meds and flush them through the feeding tube line, as well as a drain that collects Fluid from her abdomen and open wounds that need daily care. She has NO muscles left. She probably couldn't walk a block if she was allowed to.
She came home from that hospital stay with a GIANT open wound the length of her abdomen - I mean it was big enough for me to stick both my hands into - and a wound vac installed in it to constantly vacuum up the fluid and goop that goes along with healing. That fluid drained into a plastic container that hung from tube(s) coming out of her abdomen - which she had to have with her always. It was all very painful and really gross.
That was just the first hospitalization. By January she was back in the hospital with another massive infection that had burned through her diaphragm and into her lungs. This time she spent her time in pulmonary ICU. You see they told her to start trying to eat - that they thought the holes in her stomach had closed, but they didn't do regular scans to verify this....again! They were wrong. Again.
Only this time her primary physician, Dr. Rosol of Aurora Lake Geneva, had diagnosed her with pneumonia over the phone and had given her a prescription not even strong enough to deal with pneumonia. So when she didn't get better, by the time the Aurora ER took her seriously she was again near death. This time they had to do lung surgery AND abdominal surgery to clear out and treat the raging infection caused by fluid and matter leaking from the stomach into everywhere.
So apparently this type of thing isn't that uncommon with this surgery, nor are the "fistulas" that develop as a result of this complication from this type of surgery. If the tissue around this fistula isn't so damaged that it can heal on its own it could take years. If it's damaged - as hers was from all that infection - there is no sewing it closed and it doesn't heal on its own. Imagine being on a feeding tube for the rest of your life - never tasting food, never enjoying a meal or a drink or a dessert or a holiday with your family again. Never a chocolate bar, or a bowl of Cereal, or a salad, or a glass of juice. NOTHING. All because someone convinced you that gastric sleeve surgery was the answer.
So if you are considering this surgery, don't. It's just not worth the risk. I know, if my sister could go back, she would choose fat over this lack of a life any day of the week. I grew up thin and am now fat and I would NEVER EVER EVER have a surgery to reduce my weight. Although I haven't been able to be disciplined enough to do it I know the only solution is eat less, move more. Two steps. The only solution.